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Friday, June 08, 2012

Pediatric CFS Topic at June CFSAC Meeting!

I have great news about the agenda for the upcoming CFS Advisory Committee (CFSAC) meeting being held on June 13-14 in Washington, DC. Our attendance, testimony, and pleas at last May's meeting must have worked because they are devoting a large portion of Day 1's agenda to the topic of pediatric/early onset ME/CFS! Hurray!!

After years of feeling ignored, the large population of kids, teens, and young adults with ME/CFS will finally get some attention from this important committee that is chartered by the US Department of Health and Human Services. Here is a quick run-down of the relevant agenda items for June 13:

Faith Newton, mother of a 16-year old son with ME/CFS and an education expert.

Matthew, 19-year old with severe ME/CFS, a patient of Dr. Rowe, who continues to be severely disabled, despite trying all kinds of treatments.

Tina, 16-year old with ME/CFS, also a patient of Dr. Rowe, for whom treatments have helped tremendously; her OI was so severe at one point that she was passing out multiple times a day; she is now able to do school work for several hours a day, attended her prom recently, and is even running (yes, running!).

I am pleased to say that the 3 panel members representing young patients are all good friends of mine, all part of our local group of families affected by early-onset CFS. I am so excited that they will have such an active part in this meeting, telling the CFSAC member all about what life is like for kids and teens afflicted by ME/CFS. I was asked to be on the panel but will not be able to attend the meeting; I am thrilled by the final line-up.

In addition, public testimony will be heard at 3:30 pm on June 13 and 11:30 am on June 14.

So, this should be a good one! If you are unable to attend the CFSAC meeting in person, be sure to tune into the live video stream on June 13-14, Yes, due to popular demand, CFSAC has reinstated the live video feed! I think you will be able to access the live video at this link on the day of the meeting.

2 comments:

I am a parent representative at the CFSAC Meeting this Wednesday, June 13th. I would love to know what 1 thing you would like the committee members to know. If you could make 1 recommendation what would it be? Thank you!

I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!